Juli’s very rare form of liver cancer

11 Oct

I haven’t gone into details of why we are here helping out my niece Juli’s family. We are here because she has liver cancer. She has been very ill, in pain and using all her strength to fight her serious illness. The following 2 paragraphs were written by Juli to be used in my blog and her Caring Bridge page. The rest of the post is my perspective of what has happened in the last few weeks.

Her first signal of something being wrong a couple of months before her diagnosis. Her liver enzymes were elevated and she had flu-like symptoms. She was treated for ecoli bacteria, which seemed to subside after a round of anti-biotics. A week later, severe itching, hives and sleeplessness and lasted until after her surgery. When she went to her scheduled doctor’s appointment on a Friday, he immediately put her in the hospital. A year ago her liver enzymes were normal and overall health was good, so it is an aggresive cancer.

The specific cancer that Juli has  is called “introhepotic cholongio carcinoma”, which only 1 in 100,000 have. She went through a 6 hour surgery that involved 7 different procedures including the removal of her gall bladder, the left lobe of her liver, 40% of the right side and 8 lymph nodes. There was cancer in 6 of the lymphnodes and some cancer couldn’t be removed from her liver.  Her surgeon told her that most physicians have never seen a patient like Juli, but that he has treated several patients with her diagnosis. In his words, “this is not my first rodeo.

Judy and I were taking care of mom when she got the call from Juli with the news of something was very wrong, but it was still unknown what it was. She immediately flew to St. Cloud to be with Juli. We were all keeping in touch through my sister Judy, her brother and sister and the website “Caring Bridge”. The postings were always positive. Many bible quotes, many prayer requests, notes personally from Juli letting everyone know of her strong belief in Jesus, God, their power in her life, how protected she felt, and  more prayer requests for  a nights sleep free of pain.  We would anxiously await a phone call from Judy, a note through Caring Bridge, a text from someone.  Some days they came, some days they didn’t. Juli would go home and have to go back to the hospital within hours due to the unbearable pain. Finally the day came when she was able to stay home.   Judy, her mother and my sister, has been with her for the entire time. She’s been dressing the wounds every day and they have been infection free and healing.  It’s not a pleasant process, but the 2 of them get it done every morning. John and Marjay, her twin brother and older sister, were able to spend a week early on with Juli. They were able to help out with Jonathon and Lacey and be with Juli. Judy’s husband Marvin has flown back and forth and is now in St. Cloud for awhile. Her Dad Jack was there for anything that needed to be done, being with the airboat business or staying the night with Juli. Doug, her husband was taking care of their children, Jonathon and Lacey, or being at the hospital with Juli.

When a family member is going through something this serious, one always wonders what they can do. Thankfully, there was something Denny and I could do and that was to come down to St. Cloud, spend a couple of weeks and do some remodeling on their home.   Juli wanted to have a nice room to recover in and where she could also look at the beautiful lake and sunsets. Her husband Doug’s family began the process by painting and carpeting the room.  That is the room we are working on plus some other little jobs. The 3 days that I have been around Juli have been “enlightening” to me in many ways. The most enlightening is her peace.  There is not one bit of depression.  There is no need to tiptoe around for fear of saying the wrong thing.  She’s very open about here illness and discomfort, but she has this ability to not want you to feel sorry for her.  Today, Judy, Juli, Lacy and I spent the day in Orlando.  Juli’s first appointment was with the radiologist who was hoping to map her radiation. Unfortunately, she isn’t healed enough for that to happen.  She was a little disappointed, but okay with it.  Her next appointment was with her surgeon, who she loves and he loves her.  She feels truly blessed to have him as her doctor and confidant in this process. He is just a phone call or text away, 24/7. He agreed that it is too soon to begin the chemo/radiation regimen and it will October 22 before the next appointments. While Judy and I were alone for a few minutes, I said to Judy how at peace Juli seems throughout this process. She said “Juli is not afraid and has total faith in Jesus. Juli said that she thinks about the torture that Jesus was put through; the pain, the hate, the spitting while he was being put to his death. She said she is going through this pain and suffering surrounded by love and prayers. How can she not have faith with all of that surrounding her.  As a person who does have faith, but at times questions how strong my faith is, I am in total awe of Juli. She has made me feel peaceful being here. She has made me feel the love that everyone feels for her. It’s almost an aura. I know that I can be overdramatic, but it is true, an aura. I want her to know that I now feel that she will come through this and it will be a miracle. I know one other person that was as seriously ill as Juli and who also has as strong of a faith and she won a battle with a cancer that is usually terminal. I feel like I need to jump in Alligator Lake and cleanse away any doubts and let them float as far away as they can. My prayers will no longer just be a prayer, they will be prayers of true, deep faith that I want Juli to survive this obstacle and live a long life with Doug, Jonathon and Lacey.

2 Responses to “Juli’s very rare form of liver cancer”

  1. Kathy 10/13/2012 at 8:16 am #

    No words for your outstanding blog and support and love for Juli and her family! Just a note to add to the prayers.

  2. ruth 10/13/2012 at 9:16 am #

    Also at a loss for words. what a truely beautiful spirit Juli has. Will keep all in prayer.

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